RE: XL228 tasigna and more

[Guest guest]

Hey Great!!!

That's what my son says,

CML is not easy, but we do what we can to fight it.

I call us CML WARRIORS.

Of course, I always put God first and medicine next.

How do you get infused?

I just started on Tasigna and am already feeling better even though it made

all my counts go low.

I just had a visit with my Onc and discussed every phase of Tasigna with me,

and he said they weren't low enough yet to lower my dose.

One more week should tell the tale.

I am getting EKGs weekly, blood test, cbc cpn and lipase and amaylyse weekly.

For those of you who think I should change doctors, you have never met my

Doctor so you don't really know.

He is a wonderful man and Doctor and has been with me from the beginning.

He is very knowledgeable and knows blood inside and out.

He is careful in meds and is just a phone call away if I need something.

I tried Moffitt and it just didn't work out for me.

Not enough Doctor and too much nurse.

So I'm good and will fight on.

Blessings to all.

Jeanie<3

In a message dated 10/9/2008 5:18:01 P.M. Pacific Daylight Time,

rcd1929@... writes:

HI, JUST GOT BACK FROM ANN ARBOR, HAD THE INFUSION, WOW, IT WAS AN EARLY

APPOINTMENT, AND WENT FAST, I WAS OUT OF THERE BY 12:30, ERNIE PICKED ME UP AND

WE PICKED UP LEN AND WENT OUT TO LUNCH. IT WAS GREAT SEEING BOTH OF THEM

AGAIN, NEXT WEEK, EVEN IF MY LABS ARE LOW AND I DON'T GET INFUSED, I HAVE TO

GO BECAUSE IT IS THE BEGINNING OF A NEW CYCLE IN THE TRIAL, AND CALLS FOR A

BMA, XRAY, ETC. AND A VISIT WITH DR. TALAZ. TRIAL NURSE SAID THE DRUG COMPANY

HAD WANTED THEM TO CHANGE MY DOSE, LOWER IT, AND THAT WAY I WOULD GET AN

INFUSION EVERY WEEK. THEY TALKED THEM OUT OF IT, BUT FOR SOME REASON THEY

PREFER I GET A WEEKLY INFUSION INSTEAD OF DOING IT AS THE LABS ARE GOOD,. I

SAY

IF IT AIN'T BROKE DON'T FIX IT, AND RIGHT NOW I AM DOING VERY WELL ON THIS

SCHEDULE, GET INFUSED ONLY IF THE LABS ARE GOOD. WILL KEEP YOU POSTED ON THE

BMA RESULTS. BOBBU

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[Guest guest]

HI JEANIE, AN INFUSION IS WHAT THEY PUT IN YOUR VEINS.  I  HAVE A PORT IN MY

CHEST, THEY ACCESS THE PORT AND CONNECT ME TO A BAG OF CHEMICALS, AND IN AN HOUR

I AM DONE.  I MUCH PREFER TO BE ON A PILL IT IS SO MUCH EASIER, BUT THIS HAPPENS

NOT TO BE A PILL, AND IT IS WORKING VERY WELL FOR ME,  AND WE CERTAINLY ARE CML

WARRIORS, IT WASN'T THAT MANY YEARS AGO WE DIDN'T STAND A CHANCE OF SURVIVING,

BUT THANKS TO ALL THE NEW DRUGS MOST OF US OLD TIMERS ARE STILL AROUND.  GOOD

LUCK ON TASIGNA, I NEVER TRIED THAT ONE, BOBBY

a (Bobby) Doyle

Brecksville, Ohio, USA

DX 05/1995

02/2000 - Gleevec Trial/OHSU

06/2002 - Gleevec/Trisenox Trial/OHSU

06/2003 - Gleevec/Zarnestra Trial/OHSU

04/2004 - Sprycel Trial/MDACC, CCR in 10 months

#840  -   Zavie's Zero Club

09/2006 -  out of CCR

04/29/08 - XL228 Trial/ U.of Michigan

06/02/08 - CCR ( in 4 weeks)

 

From: ICANDOALLTTC@... <ICANDOALLTTC@...>

Subject: Re: [ ] XL228 tasigna and more

Date: Friday, October 10, 2008, 9:13 AM

Hey Great!!!

That's what my son says,

CML is not easy, but we do what we can to fight it.

I call us CML WARRIORS.

Of course, I always put God first and medicine next.

How do you get infused?

I just started on Tasigna and am already feeling better even though it made

all my counts go low.

I just had a visit with my Onc and discussed every phase of Tasigna with me,

and he said they weren't low enough yet to lower my dose.

One more week should tell the tale.

I am getting EKGs weekly, blood test, cbc cpn and lipase and amaylyse weekly.

For those of you who think I should change doctors, you have never met my

Doctor so you don't really know.

He is a wonderful man and Doctor and has been with me from the beginning.

He is very knowledgeable and knows blood inside and out.

He is careful in meds and is just a phone call away if I need something.

I tried Moffitt and it just didn't work out for me.

Not enough Doctor and too much nurse.

So I'm good and will fight on.

Blessings to all.

Jeanie<3

In a message dated 10/9/2008 5:18:01 P.M. Pacific Daylight Time,

rcd1929sbcglobal (DOT) net writes:

HI, JUST GOT BACK FROM ANN ARBOR, HAD THE INFUSION, WOW, IT WAS AN EARLY

APPOINTMENT, AND WENT FAST, I WAS OUT OF THERE BY 12:30, ERNIE PICKED ME UP AND

WE PICKED UP LEN AND WENT OUT TO LUNCH. IT WAS GREAT SEEING BOTH OF THEM

AGAIN, NEXT WEEK, EVEN IF MY LABS ARE LOW AND I DON'T GET INFUSED, I HAVE TO

GO BECAUSE IT IS THE BEGINNING OF A NEW CYCLE IN THE TRIAL, AND CALLS FOR A

BMA, XRAY, ETC. AND A VISIT WITH DR. TALAZ. TRIAL NURSE SAID THE DRUG COMPANY

HAD WANTED THEM TO CHANGE MY DOSE, LOWER IT, AND THAT WAY I WOULD GET AN

INFUSION EVERY WEEK. THEY TALKED THEM OUT OF IT, BUT FOR SOME REASON THEY

PREFER I GET A WEEKLY INFUSION INSTEAD OF DOING IT AS THE LABS ARE GOOD,. I SAY

IF IT AIN'T BROKE DON'T FIX IT, AND RIGHT NOW I AM DOING VERY WELL ON THIS

SCHEDULE, GET INFUSED ONLY IF THE LABS ARE GOOD. WILL KEEP YOU POSTED ON THE

BMA RESULTS. BOBBU

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[Guest guest]

Hi Jeanie,

I am happy to hear that Tasigna is working for you BUT I have to agree with

Tracey's comments.

I have been in this business a very long time and the best advice that I

give to patients who are not what I call the ordinary run of the mill CML

patients doing really well on Gleevec is to get to see a CML expert ASAP.

Doing anything less is endangering your life.

From what you have posted it is clear to me that you are getting suboptimal

care from your wonderful doctor. There are too many red flags that suggest

this: no routine PCR testing, no mutation testing, etc. If your doctor is so

expert on blood, can you list all the papers that he has published on the

treatment of CML? His treatment of your CML does not correspond to the

recommended treatment by doctors like Druker, Talpaz, Goldman, etc.

http://bloodjournal.hematologylibrary.org/cgi/reprint/110/8/2828

I know I am harsh with my comments, but as a minimum get a consult with one

of the experts. As an experiment, tell your doctor that you would like to

have a consult with another CML expert and ask his advice on who he would

recommend. His answer will be very telling.

I'm also interested in how your doctor decided to put you on Tasigna over

say Sprycel. What clinical information did he use? Also, there are many new

treatments available. Does he have access to SKI-606, XL-228, MK-0457, etc?

Also, how many patients is he currently treating with Tasigna and Sprycel?

I realize that I have more questions than answers, but it is time to act.

Zavie

Zavie (age 70)

67 Shoreham Avenue

Ottawa, Canada, K2G 3X3

dxd AUG/99

INF OCT/99 to FEB/00, CHF

No meds FEB/00 to JAN/01

Gleevec since MAR/27/01 (400 mg)

CCR SEP/01. #102 in Zero Club

2.8 log reduction Sep/05

3.0 log reduction Jan/06

2.9 log reduction Feb/07

3.6 log reduction Apr/08

e-mail: zmiller@...

Tel: 613-726-1117

Fax: 309-296-0807

Cell: 613-282-0204

ID: zaviem

YM: zaviemiller

Skype: Zavie

_____

From: [mailto: ] On Behalf Of

ICANDOALLTTC@...

Sent: October 10, 2008 9:14 AM

Subject: Re: [ ] XL228 tasigna and more

Hey Great!!!

That's what my son says,

CML is not easy, but we do what we can to fight it.

I call us CML WARRIORS.

Of course, I always put God first and medicine next.

How do you get infused?

I just started on Tasigna and am already feeling better even though it made

all my counts go low.

I just had a visit with my Onc and discussed every phase of Tasigna with me,

and he said they weren't low enough yet to lower my dose.

One more week should tell the tale.

I am getting EKGs weekly, blood test, cbc cpn and lipase and amaylyse

weekly.

For those of you who think I should change doctors, you have never met my

Doctor so you don't really know.

He is a wonderful man and Doctor and has been with me from the beginning.

He is very knowledgeable and knows blood inside and out.

He is careful in meds and is just a phone call away if I need something.

I tried Moffitt and it just didn't work out for me.

Not enough Doctor and too much nurse.

So I'm good and will fight on.

Blessings to all.

Jeanie<3

In a message dated 10/9/2008 5:18:01 P.M. Pacific Daylight Time,

rcd1929sbcglobal (DOT) <mailto:rcd1929%40sbcglobal.net> net writes:

HI, JUST GOT BACK FROM ANN ARBOR, HAD THE INFUSION, WOW, IT WAS AN EARLY

APPOINTMENT, AND WENT FAST, I WAS OUT OF THERE BY 12:30, ERNIE PICKED ME UP

AND

WE PICKED UP LEN AND WENT OUT TO LUNCH. IT WAS GREAT SEEING BOTH OF THEM

AGAIN, NEXT WEEK, EVEN IF MY LABS ARE LOW AND I DON'T GET INFUSED, I HAVE TO

GO BECAUSE IT IS THE BEGINNING OF A NEW CYCLE IN THE TRIAL, AND CALLS FOR A

BMA, XRAY, ETC. AND A VISIT WITH DR. TALAZ. TRIAL NURSE SAID THE DRUG

COMPANY

HAD WANTED THEM TO CHANGE MY DOSE, LOWER IT, AND THAT WAY I WOULD GET AN

INFUSION EVERY WEEK. THEY TALKED THEM OUT OF IT, BUT FOR SOME REASON THEY

PREFER I GET A WEEKLY INFUSION INSTEAD OF DOING IT AS THE LABS ARE GOOD,. I

SAY

IF IT AIN'T BROKE DON'T FIX IT, AND RIGHT NOW I AM DOING VERY WELL ON THIS

SCHEDULE, GET INFUSED ONLY IF THE LABS ARE GOOD. WILL KEEP YOU POSTED ON THE

BMA RESULTS. BOBBU

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